Patient power

People with inherited diseases are ready to challenge pro-lifers over the future of medical research

Patient power is getting a global voice through a new movement to represent people with a range of hereditary diseases. The grouping will support, and may ultimately control medical research into these illnesses. Its backers also aim to challenge anti-abortion, animal rights and other lobby groups that oppose some forms of biomedical research.

The movement will have teeth to back its arguments. One group of supporters has applied for patents on a gene which causes the distressing disease pseudoxanthoma elasticum. "With the heavy stick of holding a patent on the gene, we can accelerate the research process, control royalty and licence fees, and eliminate turf wars between researchers," says Patrick Terry, chairman of the advocacy group PXE International, based in Sharon, Massachusetts.

People with PXE accumulate calcium in their tissue, which gradually sags, cracks and loses its elasticity. Many sufferers go blind by the age of 30 or 40 because of damage to the retina. Terry, who has two children with the condition, worked with other sufferers to finance a patent application on ABCC6, the gene which causes PXE when faulty. It was identified last year by Charles Boyd of the University of Hawaii and other researchers backed by PXE International. "We're not interested in lining our pockets. We just want a cure," says Terry. He sees holding the patent as a way of empowering patients, the people who have most to gain from research into the condition. In the long term, PXE International may also be able to influence, and to some degree control, the direction of research into the disease.

The idea of patients applying for patents is just one new strategy for what could become one of world's most powerful political lobbies. Earlier this month, at the BioVision meeting on biotechnology in Lyon, France, Terry combined with delegates from other groups representing patients with rare hereditary conditions to form a global alliance. Founders include the British-based Genetic Interest Group (GIG), the Genetic Alliance in the US, plus patient groups from the Netherlands, Belgium and Iran.

"We want a spot at the negotiating table," says Terry. "The voice of the patient has not been heard. It's a matter of empowering communities to speak clearly and more vocally," he says. Terry says the idea will be taken forward at a meeting in Vienna in May of the European Alliance of Patient and Parent Organisations for Genetic Services and Innovation in Medicine (EAGS). Terry doesn't rule out the idea of expanding the alliance to include charities focusing on more widespread illnesses such as cancer. "We need to give attention to multifactorial diseases," he says.

"We hope to provide a new voice internationally to support the application of good science to alleviating problems of ill health," says Alastair Kent, director of GIG and president of the EAGS. The new alliance will attempt to win the moral high ground from anti-abortion and antivivisection groups, he says. It could, for example, challenge the absolute opposition by anti-abortionists to research on human eggs or early embryos.

To opponents of embryo research who say it's wrong to destroy a potential human being, Kent says: "It's a very theoretical future person they're talking about, as opposed to a very real, living person who's having to cope with a serious disease."

Similar arguments might be deployed against opponents of animal testing. Without research on animals, "you're putting the protection of the animal ahead of the cure for a human being", Kent says. Patients are "real people living real lives", says Terry.

The new alliance will be looking for consensus among its members when developing its global policies. That may be difficult to achieve in some cases, says Greg Vines, a spokesman for Britain's Parkinson's Disease Society. He says it could be difficult to reach a unified position on embryo research, for example, if patient advocacy groups are divided along religious lines. This hasn't stopped the Parkinson's society backing the new alliance. "Policy makers want to meet people with disease," Vines says. The society lobbied for patients last year when Britain was considering changing the law on stem cell research and therapeutic cloning.

Author: Andy Coghlan

New Scientist issue: 24th February 2001

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